What I Want versus What Really Happens

 Sunday Morning Comin' Down .... oh, now I got to post a music vid....

Okay, I hope that earworm is gone for the day. But it is Sunday, and I woke early, but I feel pretty well rested. I did nothing yesterday but play games on the computer, then lay down for awhile (not sleeping), and repeat. Today is my pillbox refill for the week, and there are some fairly big changes. I went through it all, and updated my spreadsheet so I can print it out for the new PC I see on Tuesday. I'd rather not, as he is getting nothing but an update. But it is a "new doctor" at the location I go to, so it is what it is.

So seeing how this is kind of the first day of making sure my dosages are right with the changes that were done, will need to watch how I feel. Of course, everyone is supposed to watch me signs of HE (Encephalopathy) as it is possible to increase after the TIPS. General signs are confusion, lack of focus, altered character ... just to name a few. Supposed to watch for jaundice as well, but that has been watched for since day one.

Though I feel mentally fresh and awake, inside I still feel a bit fatigued - not sure why. Could be the body adjusting to the changes. If not gone in a couple days I will contact Mayo to check about it. 

For all of you that read here (all two of you) thanks for the prayers and support. Keep them coming until this whole transplant thing is done.

I'm off to do my quiet time.

PeacE

It Is Finished ...

 No, not the bible quote, but my IOP I had to attend. After 2 months, 11 hours per week, this step in my journey is over. In some ways I compare it to a video game where I have just finished my 'Apprenticeship' and now may roam the world better equipped in mind and body. I've mentioned before that I really did enjoy this course and I did. I learned more about my triggers, ways to cope with things and over all how to be more self-aware. But that ends today. My Group Lead should have my completion paperwork ready for when session is over today, which I will promptly forward over to Mayo. More on that in a minute.

Last Wednesday during my 'personal' session with the Group Lead, we did the ending self-exam. That gal said she was going to miss me and that I was one of the most fun people they have had in sessions in awhile. They had even allotted me like a couple minutes after each session to share a joke - I need to find a good one for today.

So once I get the completion paperwork, and promptly get it over to Mayo, it concludes my part of the deferments that I am in control of. The psychologist I meet once a month, and last week, said it should go to the Transplant Council this week (they meet on Wednesdays) and I could have an answer this week about making the Waiting List, or if other issues came up that need to be addressed beforehand.

Yesterday I went and did lab work (1 vial of blood) and then headed to Walgreens. I did not "lose it". I did not yell and scream. I explained what happened, and the lady went to check my records on the computer. She says,"Well, the prescription is available for the full amount as of 6/4. I looked at her, and said, "Today's the 8th. Fill it, now. I never got the refill notice from Walgreens, otherwise this would not be happening." I didn't want to wait around there for 30-45 minutes (they are only like 5 minutes from home) so I went home. Come afternoon after I got the text it was ready, I thought I should go up and get it, plus the one for my Wife, but I couldn't. My mind was ... messed up. I didn't feel right driving (that's HUGE coming from me). I thought the Youngest would be out of bed soon, and he could drive us up, hit the drive-thru, and back home in 10 minutes. Only he didn't get up. The Wife texted, asking if I got hers, and briefly in text said no, don't feel good. They are open until 9pm. Get mine too. And she did.

So I took some last night, and am able to already tell a difference from not taking this for a week. I was up three additional times last night to drain the bladder. I'm still waking up, so will as the day goes how my head feels. I do have an Auxiliary meeting tonight.

Alright. So there may be some really good news within the next couple days. I'm off to find a good joke.

PeacE

Good Cop, Bad Cop

 I imagine that is how it will go at the pharmacy at some point today. One of my prescriptions has gotten messed up between the doctor, the pharmacy, and my insurance ... and a little bit by me. My fault in it is that I should have caught it before ...

What am I talking about? This one prescription is one of diuretics, which means it is a blood pressure pill as well. I started these back in December, I think - maybe January) and it was prescribed for two 100mg tablets a day. This was the 'liver doctor' that took three months to see back int he beginning. Anyways, Mayo decided to increase it to three pills/day. The prescription was sent in to Walgreens and life went on with me taking the dosage amount.

I Should have looked at the label (aside from verifying which med it was) and noticed, it still said 2/day. Two weeks ago, I noticed that oddly enough, I was running out. I filled my weekly pill boxes, and yes, I ran out. I happened to check the label and notice it was the old prescription. Well, I contacted Mayo and explained what was going on, they checked again with the doctor, confirmed it is 3/day. I said I need a new prescription sent over then, as well as one to give me an additional 30 pills so I can 'hold out' until it is time to refill. New prescription went over. My insurance put a hold on it because it hasn't been long enough from the last refill. I ran out about mid-week.

So, today I am taking the Wife with me, and going to Walgreens, to see if they can just get the pills to last me until the refill time and I'll pay out of pocket or whatever. My problem is that I start to get very frustrated and angry that even after things were explained, everyone seems like 'Okay. Well, your refill is due...' The Wife is going to keep me from raising my voice and be the voice of reason. I hope. And I hope to resolve this today. Last night I started feeling weird. It's hard to describe, so I won't waste your time describing it, but I believe it is because I haven't been taking this medication for several days. I cannot verify that. This morning I feel slightly better, but not 100%. Lord, please make this happen....

I am making dinner tonight. I figured I will crockpot a batch of chili. I got most of the fixings Wednesday, but realized last night I forgot something, and also picked up the wrong kind of beans. Sigh. What was I thinking? I picked up pinto beans, when I wanted ranch style/kidney beans. I don't even like pinto beans... So I see a grocery stop today as well.

I ordered some things from amazon a few days ago. A new S-pen for my tablet. A can tip that "spreads out" four legs. Not so much needed for balance and all, but because  the cane I am using currently is a walking can, straight, no hook. So when I sit down, it has to be propped just right to keep it from clattering to the ground. This new end-piece will make it "stand on its own" so that I don't need to worry about it sliding down the floor so much. Also got a new tablet protector case that meets my desires - my old one has been abused so much, several clips have broken, and the tablet falls out of it when carried a certain way. I've had that case since I bought the tablet several years ago. Well, the first two were to be arriving on Friday, the tablet protector on Saturday. Friday I get an email there was a "problem with the delivery" and that they would try again. I'm guessing it was marked to go out, and missed the truck or something like that. No biggee - it'll be here in a couple extra days. The cover arrived yesterday with no problem. No other package. I went online to see if there was more information about this error, but it all just stays the same. So, I figure it must be an error on their part somewhere in the process. Hope it comes Monday. OR better yet, today.

Tomorrow, I shall recount the adventures of today, and hope that there are good things to report ... or at least humorous one.

PeacE

Working A Post A Day Early

 Trying to get the jump on Friday, so I am writing this post that will sit here until morning. Previous post was so chock-full of ramblings, I didn't want to add more to it. Saved it for today.

Let's bitch about prescriptions, insurance, medical facilities and doctors (again, and again, and again). 

Update: Last Friday, the gal from the Liver Doc called, I relayed the insurance company message for the office to  'send the prescription to the pharmacy'. So the gal went to CVS Special Prescription Unit (who'd ever thought this was a thing) and they called me Wednesday. Seems they got the request, and now the insurance wants me to call them before they will give the release. Sigh. Not again. Please.

I don't recall exactly what the insurance company actually needed from me, but after talking to them, they released it. CVS was supposed to call me back on Thursday, to get the information of what the insurance informed me. at 4:55pm I realized the lady from CVS had not called, so I called the number she had called from. I got to talk to a nice rep named Joe (aren't all cool guys named Joe, eh Hoosierboy?) and ... let us just say, this is a shit-show. 

So, the basics of how this works, CVS Spec. Presc. Unit (SPU) sends the prescription to my house (not like a normal pick-up in store) by UPS - which means I need to sign for it. I could set a specific day of the week between Tues-Fri for delivery, but I never know when I will be home to sign. They will now ship the prescription to the CVS near me, who will then call me and say it is ready. When I go in to the pharmacy, I'll have to sign there to say I received it. That works!! And it will occur every month (or until I am off it, whatever). He even said he shows no co-pay due on it, even though the insurance rep had given me a Manufacturer coupon to drop the cost, so even better. Now to see when I can get it next week. Only almost 4 weeks without it....

That being said, empty calendar for the weekend. Monday have a paracentesis, and also bloodwork to be drawn at the Liver Dr's office, and my Riders meeting that evening. Maybe this weekend I will post more about the new hobbies and learning opportunities I am looking at.... stay tuned!

UPDATE: The eggs ol'e went over okay. I did a couple ingredient substitutions (small curd cottage cheese instead of creamed, and I couldn't find the baking powder to buy, or at home, so left it out). So it didn't rise up in the pan as it should have. I found it quite bland to taste, so needed to add some hot sauce to it. Wife and Youngest said it was fine. I wasn't expecting it to be a super-wonderful, never-to-be-eaten again dinner, but if they at least like it, I can make it again later. I will admit, I had cut it into 'pieces' in the pan, and I only had one - before my body decided to reject it, and threw it up. I had fought with nausea all day, and still a bit this morning. My Sister and BIL are moving to New Mexico and leave this Sunday. They are doing a yard sale today and tomorrow, to get as rid as much as they don't have to take. I'll be headed that way in about an hour or so. Called Sis yesterday and said I would be by to look at tools the BIL doesn't need anymore, and have a chance to say bye. They will be gone the better part of two years, before possibly returning here.

Last night, at dinner and the rest of the night, that nausea was bad. I think I am going to stop at Walgreens on the way to Sis' to see if they recommend an OTC for nausea, brought on as a side effect of medication. At least, I'm pretty sure it is considering at least three have it listed. Anyways, I need to get off here and get a few things done before I leave.

PeacE

I'll Take All I Can ....

 So I left you yesterday with bated breath, as I sat on hold with scheduling for my next paracentesis. Yeah, I know. About as fun as having one. Anyways, after being on hold about 15 minutes, she came back and asked if she could work on it and call me back. We verified my callback number, and I hung up, thinking 'She ain't going this far out of her way for me. They do scheduling for all their facilities in the Valley (a number of them). 'Round about this time, I get a text from Walgreens saying my diabetic pill is in, and also three others ready for refill, would I like them yo refill. Duh, yes! Then I sit there.

After a bit, I see it is about 11:30am, and I am already just done mentally for the day. I feel off-balance inside, as it has been three days since my last diabetic pill, and though my morning glucose check was only a bit higher than usual, I still feel some of the effect of not taking it. Practice run I guess, as I have to stop taking it for three days prior to the endoscopy coming up soon anyways. I decide to head down to the Post. 

A couple hours later, I get a call from that scheduler - herself. She was able to get me in on 12/4 at 11am. I am in shock. Of course I take it. When I let the Wife know, she griped it was still over two weeks away, but if they were nearly into next year, and no open slots, I'll take this one. Worst case is an ER visit (again). I am just hoping I can get through to the 3rd, for the endoscopy, without major issues breathing, as they may reschedule. Want to keep it this year, so insurance covers it.

Over the course of the afternoon, through texts, I see three of my prescriptions are ready, one being my diabetic. I decide to stop there on the way home. As I am sitting there in front of the store, re-reading the text, checking their link, I see they want to charge me $300 for the month. No, I did a 3-month discount from the manufacturer just last month. So I go into the manufacturer website, and through the text feature ( I was already signed up) I was able to get a copy of the discount code. Then I went in. Yup. As she rang up the three scrips, the one came to $300. I gave her the code, and through some long and about way, she was able to finally get it to ring-up properly at $10. I grabbed the bag, threw money and ran.

Sometimes things do work out right even after a few days of frustration. RM would say it is God at work. I don't care what it is, as long as it is in my favor.

So I get to start out today, relaxed with the para appointment set, have all my scrips current, and maybe some plans today. I had a hard time getting to sleep last night (I blame it on too much tea yesterday) and the first event today at the Post is the AZ Confederation of Motorcycle Clubs. This is the top 2 leadership in each MC in AZ that meet once a quarter on neutral ground (our Post) to work out differences, etc. Tomorrow is their 'Member Appreciation' breakfast and toy run. I like to go to these events, not because my Chapter is a member (we are not, as the VFW Riders Group is never an MC) but just to get our patch seen, and meet some of the leaders across AZ, and their chapters. But after the hard time getting to sleep, I may just sleep in a bit more.

Second event is a Celebration of Life, at the Post as well in the afternoon. I had helped a friend get the hall rental for it, as his roommate passed a few short months ago. I told him I would stay for a bit for support for him (I didn't know the roomie). Then it will be home I guess.

The Daughter sent out a list of Thanksgiving day food we had the last time we did it at their place, to our family chat earlier this week. I added she needs to add vanilla ice cream to it, and that I was going to bring a small salad (for me) just in case the food does not agree with me. This has been a daily struggle for me and eating. I can eat it one day, the next it makes me nauseous. The Sons have chipped in that one is bringing a couple desserts and some thing else. Another is bringing stuff to make truffles (I have never had them that I recall). Either way, I am anxious for Thursday just to see all the grandkids, family, and their spouses/girlfriends. 

The Daughter tell the Wife a couple days back, that their youngest (Widget - 9 months) was sick and throwing up all over (literally). After a day or two, with trying different liquids, she seemed to finally snap out of it, but not before it spread. As of last night, Daughter, SIL and even Doodad (Age 8yrs) were sick. I hope they shuck it in a couple days and Turkey Day still happens. The Wife is sure things will be fine, but I worry.

Thursday I went over the final plans with my buddy, for the Santa Run. He is booking the bus. I ordered the candy canes ... and a new pair of Santa boots. This is how these look:

Cool, right? Kinda pirate-y, yet personalized for the Christmas Cookie Monster...with bells. The reviews some stated that the bells weren't that loud, which is fine. A couple years back I had bought a pair that were the plain black, with like a 2" white trim around the top of the boot. I think they might fit the oldest Son, in case he wants to go on the Run this year. He hasn't made up his mind yet.

Welp, since my bladder and bowels woke me at 5:15am this morning, I guess you got a lengthy post from me. RM will be happy.

PeacE